One Week Old

I hope this entry finds everyone having a great day and successfully wrapping up 2007.  I think 2008 will be very special.  One week after birth, both boys are making progress and moving in the right direction.

Alex is starting to gain weight and is only two ounces from his original birth weight (babies lose about 10% of their birthweight during the first few days after birth).  He is still on the CPAP to help his breathing and they have been able to reduce the pressure several steps over the last week.  Alex continues to have apnea and bradycardia spells (called "As & Bs" in NICU lingo) on a rather frequent basis.  This is when his heartrate drops below 100 and he usually needs some external stimulation, like a pat on the back, to remind him he has to breath and to kick start his heart back up to the normal 130-140 range.  He is on caffeine to help control these spells.  We are waiting on the results of the echo test taken this morning to see if his PDA has closed yet.  Alex is still receiving all his nourishment via an IV.

Anthony is making even more progress.  He is back to his original birthweight and he is also now on CPAP after being removed from his ventilator on Saturday.  He is not having the As & Bs like Alex, probably because he is bigger.  He is also on caffeine.  Yesterday, Anthony started receiving breast milk via a feeding tube in addition to his IVs.  They will slowly increase the amounts of milk he receives each day while reducing the IV amounts.  We are also waiting for his echo results.  Anthony is also being weaned off his isolette/incubator.  They doctors do this by slowly lowering the internal temperature of the incubator as he learns to self-control his temperature.  When they get the internal temp lower enough and he is still maintaining his temp at the proper 98.6F / 37C level, they will take him out.

Mom came home on Friday night and is doing fine.  My little milking machine is pumping away every 2-3 hours and is having good success so far.  It will be nice the day she can feed a baby instead of a machine.  She had to relearn where everything was in the house after spending 7 weeks in the hospital.  

Mom and Dad got to hold the two boys together last night.  I held Alex while Tricia held Anthony.  She insisted on holding Anthony for the first time since I was the first one to hold Alex.  The boys seemed to really like their time with us and stay very calm and stable when we hold them.  I even changed my first diaper last night - probably the first of thousands.  The nurses and other staff have been really great to work with and are very supportive.

Thanks again for all your prayers and support.

Albie

3 Days Old

I wanted to give everyone a quick update on the status of the boys.  Overall, both boys are doing as well as expected for 31 week preemies and mom and dad are so grateful for their progress so far.  They both have two main issues that the doctors are trying to address.  First is their breathing and related lung immaturity.  Alex is still on the CPAP and has been since birth.  Anthony is still on the ventilator and the doctors are now having success reducing the pressure and the oxygen levels.  Hopefully Anthony can wean off the vent and onto the CPAP soon.

The second issues both boys share is called PDA and it refers to a valve just outside the heart that is supposed to close shortly after birth.  In preemies, this valve often stays open for a while and causes blood to flow to the body without its full complement of oxygen.  To address this problem, both boys have started a three day dose of ibuprofen.  Hopefully this will help this valve to close.  Once the valve closes, it should improve the overall blood and oxygen flow in both boys and should also help some of the breathing issues.

The boys are both still receiving all their nutrition via IVs.  Once the PDA issue is solved, we hope they can start some breast milk feeding via a tube.  The boys have also received doses of antibiotics and treatment with UV lamps to help fight biliribun build up - both standard treatments for preemies.

Dad was able to "kangaroo" with Alex last night.  Kangaroo care means they place the baby on your bare chest and you share skin-to-skin contact for an extended period of time - it is a recommended treatment for preemies because it really helps their stability and overall well being.  It was awesome feeling to hold Alex for almost two hours and he really seemed to be at peace.

Mom is recovering well from the C-section and the incision is healing well.  Mom is suffering from some side effects of the epidural which went too deep and caused some spinal fluid to leak out.  She has had some terrible migrane-like headaches and a very sore back.  The headaches seem to have passed and mom should be going home within a day or two.  After all she has been through, these side effects were the last thing she needed, but she is battling through them like the trooper she is.

I will continue make updates as frequently as possible.

Anthony Victor @ 3 hours old

Here is Anthony at 3 hours old.  He is intubated and on a ventilator.  They have not needed to put him in an isolette yet, but may do so to lessen the distractions around him.  He is already taking after his dad in the positions he chooses to relax.    

Alexander Thomas @ 3 hrs old

Here is Alex at 3 hours old.  He is in an isolette to help keep his temperature steady and has a CPAP around his nose which provides a steady flow of air into his lungs to help his breathing.

Santa Came Early Today

Santa came early today to the Fratini household and brought Tricia and I two fantastic presents.

At 11:47 am, Alexander Thomas Fratini was delivered by Santa and his elves. Alex weighed 2 lb 14 oz or 1280 grams - he was bigger than we expected.

A minute later at 11:48 am, Anthony Victor Fratini was delivered by Rudolph and the other reindeer. Anthony weighed 3 lb 11 oz or 1680 grams.

Both babies were taken to the NICU where they appear to be doing well. I have seen both boys with our grandparents already. The NICU staff says the boys are doing as well as can be expected for 31 week old babies. They both are on breathing assistance (Anthony - ventilator, Alex - CPAP) and it is expected to continue for a while. They are extremely cute and I have some pictures to post when I can upload them at home.

Both mommy and daddy are doing great - daddy especially since he did not have to have his tummy sliced open six hours ago. We are waiting for the nurse to come by to take mommy over to the NICU to see her sons for the first time.

We wish everyone a fantastic Christmas and again thank everyone for all their prayers and support. We are so happy with our two boys and could not have imagined anything more special in the world.

Love,

Albie & Tricia

Weights and much more

The boys are back from the ultrasound.  

The little guy's weight was 2 lb 7 oz - up 13 oz in 3 weeks.  That is 1.1 kg for all my metric-speaking friends.  He has fallen off the growth chart and is below the 5% percentile for weight at his age.  The doctor's are sure they can fatten him up later.  Overall, good growth numbers.

The big guy topped the scaled at 3 lb 13 oz - up 19 oz in 3 weeks - 1.72 kg.  "Little Hack" is in the 78% percentile for weight at his age.  This boy likes to eat...

The closest guess was made by Dee (Danielle Wagner I think since the post was made at 6:20 am) with a guess of 2 lb 9 oz and 3 lb 12 oz.  Nice job... for a prize you get to come over and help Tricia change diapers for a couple weeks.

Now the big news... the doctors are again seeing constant reverse flow in the little guy's umbilical flow.  He also did not show reactivity on the NST this morning.  Both babies did pass the BPP test.  Based on this latest news, the doctors have decided that the time is near for delivery.  Tricia has been scheduled for a c-section on Christmas Eve (Dec 24th) at 11:00 am.  This of course assumes that things remain the same for the next three days.  They could get better or worse and the delivery date would move accordingly.

We will keep you posted with any other updates... what a Xmas this will be!

 - TFF (The Four Fratinis)

Let's hear your guesses....

Tomorrow is the next weigh-in day for the twins. To refresh your memory, they were 1 lb. 10 oz. and 2 lb. 10 oz. three weeks ago. Lets hear everyone's guess about what they will weigh tomorrow - please post your guess in the comment section. We are hoping for some big numbers tomorrow.

The babies passed their BPP tests today. The doctor has also started a daily non-stress test (NST) on the donor as an additional check of his well-being. The NST monitors the baby's heartbeat and tests for "reactivity" - it expects the baby's heartbeat to spike up when he moves around in the womb. Our baby's heartbeat is showing this "reactive" behavior which is really good for a 30 week old baby. Amniotic fluid levels were good (3.9 cm and 5.2 cm). On the downside, the donor is showing some reverse flow in the umbilical artery again. However, he has dealt with the reverse flow for the last four weeks so we are not surprised.

The donor was a complete spaz during his test this morning and made it really difficult for the doctor to measure his blood flows. The doctor said "while it is a really good sign that he is moving aournd so much, now is not the time for playing such games." We think he will end up being the feisty one...

30 Weeks - Made it!!!

Monday, December 17 - happy to report that the babies passed their BPP tests (just barely) this morning and that we have officially hit the 30 week milestone.  If you recall our first blog entry three weeks ago, we had three goals for our twins - 28 weeks (first goal), 30 weeks (big goal), and 32 weeks (very optimistic goal).  Back then, we thought that just getting to 28 weeks would be great.  Well, the babies stabilized and now they have hit 30 weeks.  32 weeks here we come...(I hold my breath writing this as I do not want to jinx how far we have come).

The twins are developing attitudes now - yesterday the bigger baby did not want to breath and this morning the little baby did not want to breath during their tests.  We are not sure if they are just getting jealous of each other and pouting or if they are already testing how far they can annoy their parents - but hopefully it is just a phase.  They are even taking deciding who will be the culprit each day so we can't get too upset at either one.

Our doctors are "very happy" and "very surprised" with how far Tricia and the twins have made it.  We have now cycled through all of the attending high-risk doctors and the first one we saw many weeks ago is back on the schedule.   The doctor on call for Dec 31 (which would be the first day of week 32), has already told Tricia that she will be working that day and would be happy to deliver our babies that day so we can get our 2007 tax credits.

This Thursday is our next big event - weigh-in day.  This will be the three week mark since the last time the babies were weighed and it will be a good gauge to see how much the babies have grown... let's hope for some big numbers on Thursday.  On Wednesday I will make a post so everyone can comment and guess what their weight will be.

We can't thank everyone enough for all their support.  Special thanks to everyone who has come to visit Tricia and keep her company - also, the nurses love the cookies - keep 'em coming.  Super thanks to everyone who helped decorate Tricia's room with Xmas spirit.

 - Albie & Tricia & The Twins

PS:  I think it is obvious that these babies are Bengals fans... the first time the Browns are in the playoffs in decades and they want no part of it... and they make Tricia stay in the hospital for many weeks, sell her remaining Dawg Pound season tickets, and miss all the good home games.   Keep it up boys!

Week 29 + 4 Days

It's Friday and the good news keeps on coming.  Babies passed their tests this morning and things continue to look stable.  Tricia is doing well and appreciates all the support we have been receiving.

Monday is the start of Week 30 and our next big goal.  Please keep up your prayers to help us get through this weekend.

Have a great weekend.

Albie & Tricia & The Twins

Week 29 + 1 Day

Its Tuesday morning and Tricia just got back from her daily tests.  We are happy to report both babies passed their BPP tests and they did it right off the bat.  This is much better than some of our earlier tests when it took them over 20 minutes before they showed breathing activity - trust me - it is very stressful to just sit and watch and wait for your baby to breath while you have no way to help them.

Surprisingly, the donor's umbilical artery flow was showing some normal flow today in addition to absent end flow and reverse flow.  We have not seen any normal umbilical flow like that in our donor in many weeks.  We are not sure what it means and it could just be a fluke reading, but it is nice to hear things are looking normal for a change, even if it is just for a few seconds.

Movin' On Up...

Tricia is now the longest tenured "guest" of MacDonald Women's Hospital (Antepartum unit - pre labor) - 6th Floor at almost four weeks.  Since she was the longest guest there, she was offered the best room on the floor on Friday when it opened up (the current guest delivered her baby).  The room Tricia was in before was very nice, but this one is about twice the size and most importantly, has its own bathroom.  It even has its own refrigerator.  Here is a picture of Tricia in her new palatial room.

As of Sunday, everything with the babies is still unchanged.  They continue to pass their daily tests and are earning more time to stay inside their mother.  Hopefully they will continue to do well for a few more weeks.

Week 28 + 4 Days

It's Friday morning and we are happy to report that the babies both passed their BPP tests this morning!!!  The doctors were able to see breathing activity on both babies really quickly in the tests which was a big relief to both of us.  It is really stressful when the babies are not showing breathing activity until very late in the test.  You sit and watch the screen while the clock is ticking away in the back of your mind and you are always worried that the time will run out.  Today, both babies were showing breathing activity as soon as the test started and it was a much more pleasant experience for us as a result.

Still no change in the current treatment plan and the babies will continue to be monitored daily.  We are so happy that they have been able to stay in as long as they have so far and every additional day is even that much better.  We are so thankful for the support we are receiving from everyone!

Have a great weekend and hopefully we will be writing to you on Monday at the beginning of a new week.

Albie & Tricia

Your prayers are working!

Just heard back from Tricia - continued good news from the daily ultrasound. The donor's blood flow seems to have stabilized (absent end diastolic flow in the umbilical artery, ductus venuous and cerebral artery appear normal). We have not seen reverse flow in the umbilical artery for the last couple of days which is better than last week. The doctors are still very concerned with the donor's blood flow and still classify it as very poor, however, it does not appear to be deteriorating further as it was last week. Both babies scored 8 out of 8 on their BPP test today.

As the doctor said after today's ultrasound... "you have bought another 24 hours". Lets hope we can continue to hear that every day for the next couple of weeks.

Love and hugs to you all,

Albie & Tricia

Week 28 - We made it!

Well, today is the beginning of week 28 of our pregnancy.  We are so happy that we have reached our first goal.  If you would have asked us last Tuesday if we thought we would have made it to today, we would have been very doubtful - things we looking pretty grim last Tuesday.  Anyway, a new week is here and we are so happy things are still moving along.

A new doctor is taking over our case as our current doctor is going off the schedule.  We have heard good things about him so we feel confident in his abilities.  However, he will have his own opinions about Tricia and the babies' condition and he may be more aggressive about delivering the babies due to the continued poor blood flow to the donor.  We should know after he meets with us early this week.

Another Good Day!

Albie and Tricia - Christmas 2006

We had another great day today, both babies scored an 8 out of 8 on their BPP's once again. They were unable to analyze the blood flows over the weekend but will go back to that tomorrow morning. Tomorrow is the start of our 28th week which we are thrilled about! Thank you for all of your prayers and support.

Hangin' in there

Its Saturday afternoon and I am sitting with Tricia in her hospital room. She is reading her People magazine and I am watching football and updating the blog. We are happy to write that the babies are stable and doing well. The babies continue to get 8 out of 8 on their daily BPP tests and the doctors seem content to let them stay inside Tricia for a few more days. According to our doctor, as soon as either baby does not score an 8 on the test, they are coming out. As a reminder, the BPP test measures breathing movements, muscle tone, amniotic fluid levels, and overall baby activity.

Tricia and I want to thank everyone for their concern and the nice comments and emails we have been receiving. It eases our minds to know we have the prayers and support from so many friends and family.

We do have one funny story to share with you. To pass the BPP breathing test, the ultrasound doctor must see 30 seconds of continuous breathing activity from each baby within a 30 minute window. Well in yesterday's BPP test, our little guy was only showing intermittent breathing activity and the clock was down to the last two minutes before the doctor would fail him. As Tricia and the doctors were watching the ultrasound screen, a tiny hand from the bigger twin entered the screen and punched the smaller twin. He immediately responded by starting his breathing and he quickly accomplished the 30 seconds of continuous activity needed to pass the test. The doctor said that punch was the bigger twin's signal that he did not want to come out yet and was the motivation needed to get his smaller brother to pass the test.

We are hopeful that we be able to hit our first goal of 28 weeks on Monday. Please keep us in your thoughts and prayers.

Albie & Tricia

Weights measured today

Tricia just got back from her daily ultrasound.  BPP tests were both 8 out of 8.  Today they also estimated the weights of the babies (they only estimate the weight the babies every three weeks).  The donor is now 1 lb. 10 oz. (750 g) and the recipient is now 2 lb. 10 oz (1200 g).  The blood flows of the donor looked slightly better today as well so it looks like no delivery today.

The latest ultrasounds show continuing weakness in the blood flow to our donor baby.  The doctors say this is expected and that the blood flow will continue to weaken over time.  Unfortunately, this is accelerating the time table for delivery from weeks to days.  We are preparing for a delivery this week.  Stay tuned for more details....

First Post

As you may have heard, we have been blessed with identical twin boys.  Sadly they have been diagnosed with Twin to Twin Transfusion Syndrome and the health and well-being of each baby is in jeopardy.  We are very optimistic that we will have two healthy babies, but the doctors have told us there is a measurable chance that we may lose one or both of the babies.  We have started this blog to keep everyone up to date with the status of our pregnancy and of the twins.

Twin to twin transfusion syndrome (TTTS) is an abnormality of the placenta that affects identical twin pregnancies who share a common monochorionic placenta.  The shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulation of the twins.  The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive.  TTTS is pretty rare and only affects about 15% of identical twins that share a placenta.

Depending on the number, type, and direction of the connecting vessels, blood can be transfused disproportionately from one twin (the donor) to the other twin (the recipient).  The transfusion causes the donor twin to have decreased blood volume.  This in turn leads to slower than normal growth than its co-twin, and poor urinary output causing little to no amniotic fluid (the source of most of the amniotic fluid surrounding a baby is its urine).  The recipient twin becomes overloaded with blood.  This excess blood puts a strain on this baby's heart to the point it may develop heart failure, and also causes this baby to have too much amniotic fluid.

Here is a short summary of our pregnancy to date (please excuse my grammar as it is about 1:00 am as I am writing this):

Week 7 - Identical twin pregnancy confirmed via ultrasound.  Twins were classified as monochorionic / diamniotic.  This means the twins share a common placenta but each has their own amniotic sac.

Week 17 - Next ultrasound performed.  Weights of the two babies were 15% different (discordance).

Week 21 - Next ultrasound performed.  Weight of donor (smaller baby) was 10 oz and recipient (larger baby) was 15 oz for 29% discordance.  Amniotic fluid level (the fluid around each baby) of the donor was around 2 cm and of recipient was almost 9 cm.  Normal fluid levels are between 3 to 8 cm so our donor had too little and our recipient had too much.  Doctors made first diagnosis of TTTS.

Week 22 - Amniocentesis reduction performed on recipient - inserting a needle into the amniotic sac of the recipient to remove excess fluid.  The doctor removed 550 ml of amniotic fluid to reduce fluid pocket around recipient from 9 cm down to 5 cm.  The doctor took Tricia out of work for home rest.

Week 24 - Next ultrasound performed.  Weight of donor was 15 oz and recipient was 24 oz for 32% discordance.  Fluid levels around the donor was very low around 1 cm and recipient still between 4-5 cm.  The bladders of each baby were visible - this is a good sign that means each baby is getting enough blood flow and his kidneys are working and producing urine.  Absent end diastolic flow detected in donor's umbilical artery.  This means that the donor's heart is not going through the resting stage of a heartbeat.  This confirms that the donor's blood is not flowing through its umbilical cord as well as it would in a normal pregnancy. 

We were told by our high-risk maternal fetal medicine doctor in Cleveland to travel to Columbus, OH to meet a specialist at Ohio State University Medical Center for a laser surgery consultation (he would use a laser to sever the vascular connections between the twins in the placenta).

The specialist's diagnosis was that we had some form of TTTS in some combination with Intrauterine Growth Restriction (IUGR) of donor baby and/or asymmetric placental sharing.  He suspected unequal placental sharing as a significant factor since the donor's umbilical cord insertion was very near the edge of the placenta while recipient's umbilical cord insertion was almost in the middle of the placenta.  Due to the suspected unequal placental sharing combined with the fact that we were already 24 weeks, he felt that laser surgery was not the right course of treatment.  He immediately admitted Tricia at the Ohio State hospital for complete bed rest with regular monitoring of the babies.  Steroids were given at this time to help the babies lungs develop faster.

Week 25 - Fluid level around donor starting to show small improvement and now in the 1 to 2 cm range.  The bladders of both babies still visible - good sign.  Everything else was stable.  After spending five days in the Ohio State hosital, Tricia was released from Ohio State and we drove directly from Columbus to Cleveland where she was immediately readmitted at University Hospitals in Cleveland.  Hospital bed rest with regular monitoring is still the recommended treatment.  Ultrasounds scheduled twice a week.   The doctors are happy with recipient's condition, as he is not showing many of the symptoms that usually affect a TTTS recipient baby.  The doctors are primarily worried about the donor's health and his limited blood flow.

A Biophysical Profile (BPP) test was performed via ultrasound. The BPP test measures the health of each baby by examining the muscle tone, body movement, breathing movements, and amniotic fluid volume of each baby - both babies scored 8 out of 8!!!  Absent end diastolic flow still present in donor's umbilical artery.

Week 26 – Two BPP tests performed this week- both babies scored 8 out of 8 on both test!  Fluid level around donor was 2+ cm and in recipient was 3+ cm - getting better.  Intermittent reverse flow now detected in donor's umbilical artery.  This means a small amount of blood is leaving the baby's heart, then regurgitating back into the heart.  The doctors have also detected a slight deterioration in the donor's ductus venosus (DV) blood flow.  This is a measure of the baby's internal blood flow near the liver.  This is another sign that the donor's blood flow is becoming more difficult and is now showing in the measurements taken inside the baby.

TODAY - Today is the start of week 27 of our pregnancy.  Where are we?? - it all boils down to a waiting game.  The doctors want to maximize the amount of time the babies stay inside Tricia while monitoring the babies' health each day.  When they feel the one or both of the babies is becoming distressed, they will deliver the babies.  If one of the babies becomes distressed (most likely the donor), it could also hurt the health of the other baby so they will be delivering both babies together.  Each day they stay inside Tricia is another day for them to further develop in the ideal location.  It is very clear that our boys will be delivered prematurely, the question is how premature.  We are also preparing ourselves with that fact that both twins will be spending a significant amount of time in the NICU once they are delivered.

The doctors have told us that getting to week 28 would be the first goal we should hope to reach.  The chance of survival for a baby increases significantly if the baby can reach 28 weeks gestation.  If we can reach 28 weeks, the doctors said 30 weeks would be the next big goal as babies start to have accelerated growth between weeks 28 to 32.  Our very optimistic goal would be 32 weeks.  Normal gestation for single babies is 40 weeks and is about 37 weeks for twins.

Tricia has been a real champ through this whole pregnancy.  For the past three weeks she has been in the hospital on complete bed rest.  This means she must lie on her side all day and night except to get up to use the bathroom.  Lying on her side is supposed to increase blood flow in the placenta.  She has her blood pressure checked several times a day - fortunately her blood pressure has remained very low through the pregnancy.  Every four hours, the nurses come in and monitor the babies' heart rates.  She also is monitored daily for contraction activity.  And she is able to keep a smile on her face everyday - I don't know how she does it.

Please check out the TTTS Foundation at tttsfoundation.org for more information about TTTS.  See link on the right.

Please keep our boys in your prayers... we will provide updates as regularly as we can.

Albie & Tricia